Lhermitte-duclos Disease

Day 4 of Brain Tumor Awareness month and today I decided to share a little bit of data (that I could find) about the type of brain tumor I have: Gangliocytoma. My understanding is that this is a very rare, but benign, brain tumor that makes up about 1% of all brain tumors.

Sadly, a few of the “main” brain tumor org’s I have found do not carry much, if any, data about Gangliocytoma. Yes, they are rare. Yes, they are benign. But, it is still a type of brain tumor and the data that *is there should be included. I think that is one of my biggest frustrations since diagnosis: inclusion of *all types of brain tumors.

Anyway. Below is one of the (few) links I have found in my research. I pray that more data will be collected!

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I was thinking earlier about what I wanted to share today. I decided I would share a bit about where this blog began.

I began this blog the day after being diagnosed with a brain tumor. I knew nothing; nothing about what was ahead for me. Oh, man. I was so naive! I miss that Heather, to be honest. That Heather knew pain, sure. But she was so little then! ❤ I wish I could go back and tell that Heather I will never forget her. I wish I would have hugged her a bit longer. 😦

If you click here you can read my very first post. I am very thankful that I have those early days that I can look back on.

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Hi everyone! So today marks the beginning of brain tumor awareness month and I am planning on doing something different over here on the blog. My plan goal is to write a blog post every day this month with facts about brain tumors, or what my life is like today 9 years post brain surgeries.

Now, I may take advantage of using either Twitter or Instagram to post, but that all depends on how I am feeling each day. (I haven’t yet written about my thyroid ultrasound this week and what that involved.)

So be sure to check out my social media accounts and let’s have a great Brain Tumor Awareness Month! You can follow #btsm, #btam, or #GoGrayInMay to get involved and/or read about other brain tumor advocates.

Good night and be in touch! 🙂

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Check out my social media accounts here and here, and also click here to check out my Bonfire store. Will you be able to purchase a shirt to support me (during Covid19) and my brain tumor and rare disease life? ❤ ❤ ❤ Thank you so much!

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I distinctly remember a moment in time December 2011. This was just 5 months after having 2 brain surgeries and also getting diagnosed with Cowden Syndrome. I wasn’t in therapy at that time either.

I was in my mom’s bedroom, and we were discussing something, that which I can’t remember. But I do remember this: Experiencing the most intense panic and fear and anxiety where I felt I was going to die. Literally die. Now, I had that terror right before being wheeled in to the OR on July 27, 2011. That I would not wake up.

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I pray you are safe and well. I have been feeling stagnant this week so I decided to create some new merch, with the help of a social media friend! I will find her website and link it here. 🙂

Please click here to check out my new shirt! I am so excited to share it with you. If you’re able to, during the unprecedented time we are living in, please consider buying a shirt. It will help me in many ways. Thank you!

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So, what was it about this RDD that was different? Why didn’t I feel as empowered as years past? Why didn’t I find something to do? Like in 2015 when I organized a fundraiser at a local gym? Gosh, I wish I knew. I don’t want to lose any steam ever on being a voice for Cowden Syndrome and Lhermitte-duclos Disease. But what gives? I really need to try to figure that out.

I have a hunch but will do some deeper pondering about it.

Yesterday I spent a very lazy day at home. My family was here, and we were watching old VHS movies from my high school days (very surreal!). I found myself just doing what I could to stay present. Remembering what I could from high school. Seeing and hearing my Dad on a video was such a shock and joyful moment at once. (He’s passed away)…

Even as I am writing this, I realize (finally?) that any day can be Rare Disease Day and I have the control! I suppose one of the things I am grateful for oddly enough post-diagnosis is that I have found my voice to advocate for myself. I never knew I needed it; but here we are and I CAN DO IT.

I didn’t think about anything health-related yesterday which is pretty damn awesome in my book. No brain surgery or hysterectomy memories, no “day-dreaming” of what my life will never be.